Lovebuch family happenings

I was discharged on day +28, but I found myself back at 8NE on Saturday for a fever. I enjoyed 8 days at home with no major events, just getting back into the swing of things and trying to get settled into a routine. Tougher than I thought to fit in three good meals, strict medication times, visits to the clinic, and 4 hour IV-infusion for magnesium. The first days out of the hospital were a blur: I think I was just tired from not getting the best of sleep in the hospital and then being more active at home. You don't realize everything the hospital does for you until you get home and you're pretty tired already by 10 am from walking around, prepping breakfast, playing with Alpen, etc. Even though I walked a mile each day in the hospital, I am still surprised by how weak I have gotten in the legs and the upperbody. I know it would have been so much worse had I not been able to walk at all, but I thought it wasn't going to be so noticeable. It's also a good example of how

The first white cells showed up this morning! Big sigh of relief for me. The nervousness was creeping up, but I was reassured just yesterday that the odds of getting the cells soon was real high so I calmed down a bit, but boy, its nice to finally see it. Now begins the march to discharge: 500+ Neuts, eating well, and get all switched-over from IV meds to pills.  Don't know how long this will take, depends on how fast my gut heals so I can start eating larger meals without nausea and how quickly my neuts get to 500.  Since this news trumps any of my hospital observations for the week, I'm going to leave the post at this.  meanwhile back at home, Alpen is getting into the christmas spirit  Nice view of the Alpenglow on mt rainier last night from the hosp  This IV pole will be much less busy in a few days!

Been a bit of a gap, but I’m now at day +14 post transplant. So far there has be no official record of engraftment, which means I’m still at 0 neutrophils. However, I feel that I am close: my throat pain has gotten better, which the only way to account for that is that some white cells have been made.  They just got recruited to the trouble areas and aren’t floating around the bloodstream to be picked up in a blood draw. The saying around here is that the patient often gets a few days heads up before when the labs show engraftment because the mouth sores start to feel a little better. As far as my issues. I feel pretty pleased, nothing I haven’t experienced before, nothing crazy, nothing to go down to the ICU. No need for opiates to cover pain.  I did have a GI bleed that resulted in a scope. But the scope was productive and the gastrointerologists were able to apply a clip to an ulcer in my upper stomach that was oozing and continuing to cause a source of blood to be in my gut—an

Our favorite christmas cactus, Alfred, is really a thanksgiving cactus. His progeny appear to be on the same bloom schedule even though they live in different rooms. Alpen has gotten his mitts on two blooms so far. Yesterday Alpen rolled over from back to tummy for this first time! Anyway, get your own blog Alpen am I right?! This blog is about Derek! With Derek at the hospital, I'm on my best behavior with regard to the plants - that means no watering! Alfie and his son in the beginning of bloom season Alfie and my son enjoying the blooms Two bros, broin' it up!

Yesterday I got my new immune system! As promised, they arrived around 4pm. Holding the cell-bag in my hand was a great experience. They didn’t look like much—like a watered down tomato soup—but they were sure important and represented so much. I was surrounded by family, with my parents, Briana, Peggy (Briana’s mom), and Alpen. It was nice to share this momentous and symbolic occasion with them. The cells had been filtered out of my donors blood some 16 hours previous, put on ice, and hand-couriered from Europe to Seattle. A logistical triumph indeed. Fresh cells meant no issues with any frozen preservatives so I was happy about that.  Like other patients I have talked to or read about, I felt a huge hit of gratitude for my donor. Just goes to show that even in a time when political borders are tightening-up, the human-human bond remains strong and people are out there willing to help. For me it meant a stranger in Germany went out of her way to jump through some hoops, get a tempora

I guess I got a lil inspired by breezy's post so here is an adapted version of what I wrote up in my journal: The TBI was different than I thought. I stand what looks like a modified standing closet from ikea. They put a towel beneath my feet. A large bicycle seat goes between my legs. But I only sit on it 5% of the time when its inbetween the 3-minute beam segments. In front of me goes a hard plastic board with two tin and candium blocks to protect my lungs. They didn’t cover my whole lungs so I said “a little small aren’t they” and the nurse responded “There about twice as big as most peoples,” And then she explained that “we still want some radiation to get to the lungs, so just trying to block out some” and I’m standing there thinking. “I don’t think a leukemic cell is hiding in my lungs, could we go with full blocks please.”  They also make you take off underwear and socks, and I asked why socks, cause it seems like nbd if my feet get a miniscual amount less radiation. Th

Well it seems like we're due for an update here and I (breezy) am not going to let the perfect be the enemy of the good, so I'll keep this one short (the title is therefore a bit of a misnomer, but it's the best I could come up with).  We've continued to have a pretty good time getting out and about while D has still been feeling relatively good and counts have been high. Over the 3-day weekend we turned a friday visit that Alpen had with the occupational therapist (another story for another blog) into an outing around our old capitol hill stomping grounds, visiting friends and, most importantly, the coffee shop on the corner of our old apartment for some seasonal caffeinated beverages (I think you know what I'm talking about!). We visited with some friends Jay and Rach at their new house that's only a 15 minute walk from our house (woo hoo!) on two occasions, allowing Alpen to get pretty comfortable in the new digs (as shown below). On Saturday night we s

Treatment plan is coming together.  I’m scheduled for a transplant date of Nov. 16 th . This is preceded by two weeks of radiation treatment in early November.  Some good news is that they found a donor! She is a 10/10 HLA match and 24-years old—younger stem cells are preferred—and lives in Europe.  This is really good news, expected news, but good news.  People of European descent have a high probability of finding a match in the registry just because there is more participation. Finding a donor so quickly wasn’t always the case: in the past people used to wait and wait for a donor, but now with the registry and the amount of people who have signed up, the finding-a-donor process has become much more successful.  Another advantage of stem-cell transplant today is that If a match can’t be found, they can use cord blood—from donated umbilical cords after birth—which have good outcomes even if the HLA match isn’t as good. If the donor for me follows through, she will donate the stem cel

Life rarely goes as planned, and treatment is no exception. The plan was to administer some chemo to knock the leukemia back and then go on the car-t trial. However, the little amount I had put me in remission and now I’m off the car-t trial and prepping for stem cell transplant. The plan was to knock it back just a little (my bone marrow while I was in Swedish was reported at 30%--nothing to sneeze at), so Dr. Shustov ordered ¼ of the normal dose of Cytarabine, and removed another chemo from the typical induction dose, methotrexate, entirely. The “whiff” of cytarabine (Dr. Shustov’s word) apparently really connected with my leukemia cells and killed enough of them that I am in remission at the moment according to flow cytometry. Our hypothesis was that the leukemia this go around happened to be highly sensitive to cytarabine. Dr. Shustov was quite surprised that I was put into remission by such a weak dose. This is, of course, good news. However, it was not the plan, and when I first

We're trying to use these weeks before Derek's next phase of treatment (more to come in DerekPost ™ later this week) to get out and have a little bit of family fun. Last friday we took a hike to Talapus Lake and in the Alpine Lake Wilderness area. Alpen spent the first half hour or so swiveling his head from side to side, taking in the new scenery, but for most of the rest of the hike he slept pretty well in the carrier. We enjoyed some sandwiches from PCC at the lake and then, on our way home, stopped at a new favorite place in NorthBend called SwirlYo! They sell.... yes you guessed it - frozen yogurt, yo!  Also included a photo of Alpen in a normal person chair for fun.

It’s been a busy two weeks since I’ve left Swedish, two Saturdays ago the 5 th , I checked into the UW hospital to get a Hickman central line catheter installed in my chest in preparation for chemotherapy. I had a Hickman installed back in the 2012. A Hickman means no swimming, and showering is annoying because it needs to be covered w/ plastic wrap.  But it also means I can get chemo through it and no more arm sticks for blood draws. I had two rounds of Cytarabine in the hospital. Dr. Shustov wanted to knock back the systemic leukemia, but not eliminate it, because the CAR-T cells will need something to attack, latch, and multiply. Dr. Shustov said he ordered a ¼ of the amount of cytarabine that he would give for standard ALL-treatment. It was nice because I didn’t feel too sick or nauseated after receiving the drug, but it was still strong enough to knock my counts back for two weeks. Following the Cytarabine, I went home for three days, and then back to the clinic for an Ommaya tap

I found out some bad news last week: I’m no longer in remission. Ever since Alpen came home, I had been having some head-aches and sinus pressures, and then more recently I started seeing binocular double vision. Following a visit to the ophthalmologist, where he said the double vision was caused by an increase in brain pressure, I checked into the ER for an emergency MRI, where they found a mastoid behind my right ear along with some pictures that were likely showing a malfunctioning of my Ommaya port (a piece of hardware in my head that we used in the last round of treatment for better access to the Central Nervous System). But which of these was the cause of the increase of pressure? The mastoid wasn’t big enough and not in the right location. Something else was up and through comparison of the MRI and CT images I had before the installation of the port two years ago, Dr. Gala, the neurosurgeon, thought a cyst had formed between my ventricles and the port and was causing improper f